Anyone have granulomatosis with polyangiitis (GPA) or Wegener's?

Posted by suska @suska, Sep 15, 2017

Just diagnosed in May, 2017. On a maintenance dose of 12.5 mg. per week of methotrexate Tapering off prednisone since May also-2.5 mg every other day for 1 more week. Was feeling fine until @ two weeks ago with starting the maintenance dose of methotrexate. For two-plus days I have side effects of extreme fatigue and tiredness and some gastrointestinal problems. Also, some insomnia. Is this normal for methotrexate? Could the symptoms be related to the steroid tapering? Thank you for considering this.

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@purehope2022

What are you taking to control your GPA... not just the kidney part? When diagnosed in 2018 I was seeing a hematologist because my body stopped making Red blood cells. Once the GPA was being treated 60mgs daily of Prednisone and 4 weekly infusions of Rituxan every 6 months, I didn't need any more blood transfusions to keep me alive. I did, in the process also lose my septum (GPA ate a whole right through it ... as well as my right eardrum. Now, finally in some kind of remission, I just had my eardrum reconstructed at Mayo in Jacksonville. The Reumatologists there did my diagnosis and a treatment plan--then I went home and had my ENT, Hematologist and Reumatologist look at their reports. Not one of them balked at having the research of those on the front lines of research. Once GPA is under control... it stops the destruction in its tracks. My body began making RBC's again. I lrecently learned of a woman whose hearing returned 4 years later). Best of everything to you on your journey. God bless you.
Unflatering photo of me 22 hours post-op, rocking my Van Gogh ear bandage.

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@purehope2022 You may see the photo as an unflattering picture of you, but the rest of us see a healthy, happy woman!!! Please stay around, others NEED your positive outlook!

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@colleenyoung

Purehope, I love your username. And yes, you certainly are rocking the Van Gogh look. It's so helpful to see real pictures and read first-hand experiences. Yay, that you're producing red blood cells again.

How is your hearing with the newly reconstructed ear drum.

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I am now 6 weeks post-op with newly constructed eardrum. My first hearing test was not encouraging. A drop in both high end and low end sounds with reconstruction--I heard better with the hole. 'However, having a hole in my eardrum meant that with every shower, hair wash, swim, etc. I had to make a water-proof plug with a cotton ball and vaseline, so that it couldn't get into my ear canal. I can't believe how much easier life is without having to think and about and do that. I'll have a re-test in 6 months to see if anything has improved. With my hearing loss now in the "moderate" range, I will be a candidate for a hearing aid. Still hoping for the best. Time will tell.

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@purehope2022

I am now 6 weeks post-op with newly constructed eardrum. My first hearing test was not encouraging. A drop in both high end and low end sounds with reconstruction--I heard better with the hole. 'However, having a hole in my eardrum meant that with every shower, hair wash, swim, etc. I had to make a water-proof plug with a cotton ball and vaseline, so that it couldn't get into my ear canal. I can't believe how much easier life is without having to think and about and do that. I'll have a re-test in 6 months to see if anything has improved. With my hearing loss now in the "moderate" range, I will be a candidate for a hearing aid. Still hoping for the best. Time will tell.

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@purehope2022, did your surgeon say anything about an adjustment period to "relearn" hearing with the newly constructed eardrum? I'm not well-versed in this, but I wonder if @julie04 may have some thoughts.

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@colleenyoung

@purehope2022, did your surgeon say anything about an adjustment period to "relearn" hearing with the newly constructed eardrum? I'm not well-versed in this, but I wonder if @julie04 may have some thoughts.

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Thanks for asking. We will do a re-check in 6 months. Dr. Breen didn't suggest a "re-learnng." I have been using my earphones with just that ear to 'force it' to hear 😉 That is completely my idea, there is no medical science or advice behind it, only pure hope <3

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Anyone out there dealing with granulamatosis polyangiitis with vasculitis? With organ involvement?

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@momo75

Anyone out there dealing with granulamatosis polyangiitis with vasculitis? With organ involvement?

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Hi, my rheumatologist suspects that I now have GPA and my heart and kidneys are the organs involved.
I'm expecting a call tomorrow from another rheumatologist that specializes in GPA, and will be undergoing a biopsy soon to confirm dx.

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@momo75

Anyone out there dealing with granulamatosis polyangiitis with vasculitis? With organ involvement?

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Hello, Sheims 022.
I have GPA and my Heart and Kidneys are the organs involved, altho I have a healthy heart and a healthy lungs,
its the veins leading to the heart and lungs that that are damaged due to vasculitis, I also have chronic Kidney disease due to the Vasculitis and drink quite a bit of water every day, at first I started drinking about 60 oz of liquid a day and now I drink about 32 oz a day. I am starting my 11th year with GPA and in remission. I wish there were more Rheumontologist out there, right now my Primary doctor is watching over me.
I can answer any questions you ask, I take two "preventive" heart pills and take no medication for my kidneys and none for my lungs, when I was first diagnosis I took Prednisone. Write using the words ''GPA'' MFB

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Since 3 years i have been diagnosed with Wegener desease it make me ill i had Ritumax and they had to stop half way because my body did not accept the whole drug.. i am 40 years old 😢❤️

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@holland13

Since 3 years i have been diagnosed with Wegener desease it make me ill i had Ritumax and they had to stop half way because my body did not accept the whole drug.. i am 40 years old 😢❤️

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holland13, nearly all patients can be desensitized to Rituximab. https://hemonc.org/wiki/Rituximab_(Rituxan)_desensitization_protocol
Maybe the only nice thing about Wegener Disease is that people can go into remission. Well, and with treatment it won't shorten your life.
I hope you can get some good medical care.

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@holland13

Since 3 years i have been diagnosed with Wegener desease it make me ill i had Ritumax and they had to stop half way because my body did not accept the whole drug.. i am 40 years old 😢❤️

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@holland13 Welcome to Mayo Clinic Connect! I’m glad you found us. I, also, had a problem with Rituximab the first time I got it. I was monitored for a while in the infusion center and then they sent me to the ER. No long term affects, but I was taken off the drug. A few years went by and I kept telling the doctors that Rituxan helped me so much that I had to try again. So, I tried again with a more dilute solution and Benadryl prior. The infusion usually takes 1 hour, but, for me, it takes almost 3 hours. I feel fine after! Talk to your doctor and try again! Suggest that you do the desensitization protocol as in the wonderful article which @gently sent.
And try to relax! Have a good book or some music with you!
Will you talk to your doctor? I know you can do it!!

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